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Just diagnosed
Hi would like to introduce myself... My name is Claire and I was given the news yesterday that I have multiple myeloma + Amyloidosis. I live in Perth Australia and was wondering if there is anyone else in Perth with this combination.
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Just diagnosed
Hello, Claire,
I do not live in Perth, far from it. However, our disease is so rare that you will probably not find many if any people in your area with the combination of myeloma/amyloidosis. Would be glad to share some of my experiences thus far with you.
Hope you have found a physician that can help you and that your are confident in. Best of luck in your journey.
Linda
I do not live in Perth, far from it. However, our disease is so rare that you will probably not find many if any people in your area with the combination of myeloma/amyloidosis. Would be glad to share some of my experiences thus far with you.
Hope you have found a physician that can help you and that your are confident in. Best of luck in your journey.
Linda
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lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Just diagnosed
Hi Linda,
I have the feeling that there won't be any as all the doctors ( physician, cardiologist and hematologist) keep saying it's rare! In fact the cardiologist said that he has been doing this for 14 years and he has never seen it - he is one of the most respected in his field over here.
At the moment I am feeling a bit lost and overwhelmed. My husband and I have spent the whole day trying to get our heads around the jargon, treatments, drugs, transplant information that is out there on the Internet but there is so much information out there it all a bit too much to take in. we have been putting together a list of questions to ask the hematologist.
Can you tell me about what you have gone through?
I have the feeling that there won't be any as all the doctors ( physician, cardiologist and hematologist) keep saying it's rare! In fact the cardiologist said that he has been doing this for 14 years and he has never seen it - he is one of the most respected in his field over here.
At the moment I am feeling a bit lost and overwhelmed. My husband and I have spent the whole day trying to get our heads around the jargon, treatments, drugs, transplant information that is out there on the Internet but there is so much information out there it all a bit too much to take in. we have been putting together a list of questions to ask the hematologist.
Can you tell me about what you have gone through?
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Just diagnosed
Hello Claire,
I'm very sorry to hear about your diagnosis. I'm sure you're feeling very scared and overwhelmed right now. You are doing the right thing, though, by trying to educate yourself and learn as much about what you have and how to treat it. Knowledge is definitely power in this sort of situation.
As you probably have learned already, the combination of myeloma and amyloidosis is actually rather common. In case you have not seen it, this article,
https://myelomabeacon.org/news/2010/09/15/multiple-myeloma-associated-amyloidosis-what-every-patient-should-know/
you should read it. It provides a lot of useful information about what happens when the two diseases happen together. It also points out that at least 10-15 percent of all myeloma patients eventually get amyloidosis.
I have a couple of quick pieces of advice.
First, don't stop looking for a doctor to treat your disease until you find one who focuses on multiple myeloma. Do this even if it means flying across Australia to Melbourne or Sydney, although I don't think that will be necessary. A local oncologist might see only a couple of myeloma cases a year; a myeloma specialist will probably see 10-30 times as many, or more, in a year. The myeloma specialist also will be much more knowledgeable about the best approaches to treating cases such as yourself.
The Myeloma Foundation of Australia has a free support number you can call, and they probably will be able to tell you the name of myeloma specialists in your area. Their number is 1800 693 566. They also will tell you which hospitals in Australia are the leading myeloma centers. I believe most of them are, in fact, in Melbourne or Sydney, but I may be mistaken.
Second, unless your doctors are telling you that your myeloma is likely to cause serious damage to your body in the very near future, give yourself some time to learn about your treatment options. In many cases, there is no need to rush a decision about what to do.
Good luck, and please keep us updated on what you find out , what you decide to do, and how you are doing.
I'm very sorry to hear about your diagnosis. I'm sure you're feeling very scared and overwhelmed right now. You are doing the right thing, though, by trying to educate yourself and learn as much about what you have and how to treat it. Knowledge is definitely power in this sort of situation.
As you probably have learned already, the combination of myeloma and amyloidosis is actually rather common. In case you have not seen it, this article,
https://myelomabeacon.org/news/2010/09/15/multiple-myeloma-associated-amyloidosis-what-every-patient-should-know/
you should read it. It provides a lot of useful information about what happens when the two diseases happen together. It also points out that at least 10-15 percent of all myeloma patients eventually get amyloidosis.
I have a couple of quick pieces of advice.
First, don't stop looking for a doctor to treat your disease until you find one who focuses on multiple myeloma. Do this even if it means flying across Australia to Melbourne or Sydney, although I don't think that will be necessary. A local oncologist might see only a couple of myeloma cases a year; a myeloma specialist will probably see 10-30 times as many, or more, in a year. The myeloma specialist also will be much more knowledgeable about the best approaches to treating cases such as yourself.
The Myeloma Foundation of Australia has a free support number you can call, and they probably will be able to tell you the name of myeloma specialists in your area. Their number is 1800 693 566. They also will tell you which hospitals in Australia are the leading myeloma centers. I believe most of them are, in fact, in Melbourne or Sydney, but I may be mistaken.
Second, unless your doctors are telling you that your myeloma is likely to cause serious damage to your body in the very near future, give yourself some time to learn about your treatment options. In many cases, there is no need to rush a decision about what to do.
Good luck, and please keep us updated on what you find out , what you decide to do, and how you are doing.
Re: Just diagnosed
Claire,
I believe Terry has given you some good info, please read the article. The one thing that is foremost in the treatment of our disease, however, is that the Amyloidosis stems from our multiple myeloma. The important thing in our treatment is to control the myeloma which will in turn slow the progression of the Amyloidosis. I would not delay treatment for the myeloma if possible.
I was diagnosed first with the Amyloidosis back in Feb 2012. I had noticed some symptoms, unexplained weight loss, enlarged tongue, joint pain, shortness of breath. After several visits to my pcp was referred to an ent for the issues with the throat. Immediately she knew something was wrong and did a biopsy where yet amyloid was discovered. I was referred to an oncologist who did the biopsy to then identify the myeloma. I was diagnosed in April. I was immediately started on five cycles. Of Velcade/Revlimid/dexamethasone. I then was referred for a stem cell transplant in Sept. it was not completely successful in that I am not in complete remission, however, the numbers are much better and am presently on a maintenance treatment with Revlimid. The myeloid had already affected my entire digestive tract and since last April has already invaded ,my heart. The hope is that the control of the myeloma will slow the progression and maybe reverse some of the damage done by the amyloid.
I initially felt very frightened when diagnosed, but have come to understand how much advancement has been made in research and treatment and am hopeful for a long future ahead. Hope you are successful in your search for treatment.
Linda
I believe Terry has given you some good info, please read the article. The one thing that is foremost in the treatment of our disease, however, is that the Amyloidosis stems from our multiple myeloma. The important thing in our treatment is to control the myeloma which will in turn slow the progression of the Amyloidosis. I would not delay treatment for the myeloma if possible.
I was diagnosed first with the Amyloidosis back in Feb 2012. I had noticed some symptoms, unexplained weight loss, enlarged tongue, joint pain, shortness of breath. After several visits to my pcp was referred to an ent for the issues with the throat. Immediately she knew something was wrong and did a biopsy where yet amyloid was discovered. I was referred to an oncologist who did the biopsy to then identify the myeloma. I was diagnosed in April. I was immediately started on five cycles. Of Velcade/Revlimid/dexamethasone. I then was referred for a stem cell transplant in Sept. it was not completely successful in that I am not in complete remission, however, the numbers are much better and am presently on a maintenance treatment with Revlimid. The myeloid had already affected my entire digestive tract and since last April has already invaded ,my heart. The hope is that the control of the myeloma will slow the progression and maybe reverse some of the damage done by the amyloid.
I initially felt very frightened when diagnosed, but have come to understand how much advancement has been made in research and treatment and am hopeful for a long future ahead. Hope you are successful in your search for treatment.
Linda
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lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Just diagnosed
Claire (and Linda),
I should clarify a bit what I meant by the statements "give yourself some time to learn about your treatment options" and "there is no need to rush" (in many cases).
I am not suggesting that you should delay treatment for months and months. Linda is correct that, given your amyloidosis, you will need to get treatment quite soon.
I do believe, however, that unless your physician can clearly explain to you that your condition demands treatment absolutely immediately, without even waiting a few weeks, then you should take a few weeks to get a second opinion and learn more about your options.
I am not an expert so I may be underestimating the urgency of your situation.
However, I do worry about your being rushed into a treatment decision, particularly if your case is not being handled by a myeloma specialist.
I should clarify a bit what I meant by the statements "give yourself some time to learn about your treatment options" and "there is no need to rush" (in many cases).
I am not suggesting that you should delay treatment for months and months. Linda is correct that, given your amyloidosis, you will need to get treatment quite soon.
I do believe, however, that unless your physician can clearly explain to you that your condition demands treatment absolutely immediately, without even waiting a few weeks, then you should take a few weeks to get a second opinion and learn more about your options.
I am not an expert so I may be underestimating the urgency of your situation.
However, I do worry about your being rushed into a treatment decision, particularly if your case is not being handled by a myeloma specialist.
Re: Just diagnosed
Hi Claire, my name is Ronda, I am 52 and I live in New Zealand (hey, we're almost neighbours!). I have just joined this forum. I'm very sorry to hear of your diagnosis but would like you to know that there is hope and that you are not alone.
I was told in November 2011 that I had either amyloidosis or multiple myeloma after 2 years of feeling progressively unwell and going from doctor to doctor trying to get answers. Amyloidosis was confirmed by a kidney biopsy and bone marrow biopsy but I was told that "technically" I also had multiple myeloma. My heart and kidneys have both been affected. I was so unwell that I couldn't walk the 100 metres to our letterbox without getting chest pain and having to stop and rest, my feet and ankles were swollen and I was always tired.
I started on chemo (Velcade + cyclophosomide + dexamethadone) just before Christmas in 2011. This regime was stopped after 6 months when I reached a plateau but my health has improved dramatically. When I look back to how I was a year ago it's hard to believe I had got so unwell but now I am starting to exercise again and life is looking almost normal. The next step will probably be a stem cell transplant but it is too risky at the moment.
Everyone tells me that my haematologist is the New Zealand expert on amyloidosis so I consider myself very lucky and I put all my trust in him.
So don't despair, hang in there and keep talking. Read lots to keep yourself informed but be careful of the source of your reading because some of it can be unnecessarily alarming.
Good Luck
I was told in November 2011 that I had either amyloidosis or multiple myeloma after 2 years of feeling progressively unwell and going from doctor to doctor trying to get answers. Amyloidosis was confirmed by a kidney biopsy and bone marrow biopsy but I was told that "technically" I also had multiple myeloma. My heart and kidneys have both been affected. I was so unwell that I couldn't walk the 100 metres to our letterbox without getting chest pain and having to stop and rest, my feet and ankles were swollen and I was always tired.
I started on chemo (Velcade + cyclophosomide + dexamethadone) just before Christmas in 2011. This regime was stopped after 6 months when I reached a plateau but my health has improved dramatically. When I look back to how I was a year ago it's hard to believe I had got so unwell but now I am starting to exercise again and life is looking almost normal. The next step will probably be a stem cell transplant but it is too risky at the moment.
Everyone tells me that my haematologist is the New Zealand expert on amyloidosis so I consider myself very lucky and I put all my trust in him.
So don't despair, hang in there and keep talking. Read lots to keep yourself informed but be careful of the source of your reading because some of it can be unnecessarily alarming.
Good Luck
Re: Just diagnosed
Hi Claire,
Sorry to hear about the diagnosis. I live near Ballarat and see myeloma specialists at the Alfred in Melbourne and have been very happy with my treatment. I am now in remission.
As Terry writes I think it is important to understand the different treatment options however sometimes PBS will only subsidise the treatment if it is in the "order" that is set out in their guidelines (so there may not be many options to start with). It may have changed a little since I was first treated 4 years ago.
All the best and if you want to talk let me know and I'll send you my number.
Libby
Sorry to hear about the diagnosis. I live near Ballarat and see myeloma specialists at the Alfred in Melbourne and have been very happy with my treatment. I am now in remission.
As Terry writes I think it is important to understand the different treatment options however sometimes PBS will only subsidise the treatment if it is in the "order" that is set out in their guidelines (so there may not be many options to start with). It may have changed a little since I was first treated 4 years ago.
All the best and if you want to talk let me know and I'll send you my number.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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